August 21, 2014 10:32 am

Young man with ALS shares heartbreaking response to Ice Bucket Challenge

WATCH ABOVE: You’ve likely heard about the ice bucket challenge, aimed at raising money for ALS research. But lost in its popularity are the stories of pain, loss and suffering. One young man changed that with his video. Shirlee Engel reports.

EDMONTON – In recent weeks it seems everyone and their dog has taken up the ALS Ice Bucket Challenge. Celebrities, politicians and athletes are all lining up to have buckets of ice water dumped over their heads, in the name of raising funds and awareness for ALS research.

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With videos of the challenge showing up on every form of social media to the point of saturation, you might be tempted to skip them. But if you only watch one Ice Bucket Challenge video, let this be it.

Anthony Carbajal posted a video to YouTube on Monday (and then a shorter version on Tuesday), which at first might make you laugh, but will likely end with a tear in your eye.

It begins with Carbajal, clad in a string bikini top and hot pink shorts with “Kiss My ALS” across the bottom, goofily washing a car before being doused with ice water.

Anthony Carbajal being doused with ice water

YouTube

The video quickly turns sombre. Inside and dressed in clothes again, the 26-year-old speaks directly to the camera.

“So why did I do it? I’ve been so terrified of ALS my entire life, because it runs in my family,” he says before being overwhelmed by emotion. He covers his face with his hands and turns away from the camera. When Carbajal turns back, his eyes are red and his voice is shaky.

“ALS runs in my family.My grandmother had it; she was a second mother to me. My mother was diagnosed when I was in high school, and … five months ago I was diagnosed. ALS is so, so f***ing scary, you have no idea.”

WATCH: ALS sufferer Anthony Carbajal shares his heartbreaking story and his thoughts on the Ice Bucket Challenge.

The video shows Carbajal caring for his mother, 43-year-old Catherine Scott. She can still talk with some difficulty, and manages short steps. But she can no longer use her arms or hold her head upright. Carbajal helps her out of bed, feeds her via a tube in her stomach, and puts her back to bed, where he puts a breathing tube over her nose.

ALS is short for amyotrophic lateral sclerosis, also known as Lou Gehrig’s disease. The neurodegenerative disease causes weakness and atrophy, or wasting away, of the body’s muscles. People with ALS lose their ability to move, speak, and eventually, breathe. Researchers don’t know what causes it, and there is no cure.

READ MORE: What is ALS? The disease behind the ice bucket challenge 

“I hate talking about it, I really hate talking about it,” a choked-up Carbajal says in a voice over. “That’s probably why no one talks about it, because it’s so challenging to watch. Nobody wants to see a depressing person who is dying, who has two to five years to live. They don’t want their day ruined.”

Carbajal says the muscles in his hands are beginning to atrophy. He has trouble buttoning his shirt, and starting his car.

“Eventually I won’t be able to use my arms or hands at all. Eventually I won’t be able to walk, talk, and breathe on my own. And that’s the real truth of what ALS is. It’s devastating.”

Carbajal talks about people being frustrated with the sheer volume of Ice Bucket Challenge videos out there right now, and says he doesn’t mind because it means the awareness campaign is working.

“I promise your news feed will go back to cat videos and ‘Let It Go‘ covers, but right now the ALS community has the main spotlight. For once in my entire life, I’m seeing it in the forefront.”

Carbajal says he is grateful for every single Ice Bucket Challenge video.

“You have no idea how every single challenge makes me feel – lifts my spirits, lifts every single ALS patient’s spirits. You are really, truly making a difference and we are so, so, so grateful. “

This isn’t the first time Carbajal has shared his feelings about ALS. In a video posted online two weeks after his diagnosis, he and his mother talk about their struggle.

Inevitable from theavni on Vimeo.

“My mother had it, and ironically I took care of my mother when she had it,” Scott says in a weak voice, while sitting in a wheelchair.

“And now I have it, and my son is taking care of me. And now he has it, so it’s kind of a ‘full circle’ type of thing,” she adds.

The disease ended Carbajal’s photography career.  He used to shoot weddings, but ALS made it difficult for his fingers to change the settings on his camera.

“Photography was the one thing I could do on the weekends, and during the weekdays I could help take care of my mom. She would sit next to me; I would edit every single wedding with her. We bonded a lot.”

Carbajal ended up having to cancel about 25 weddings, and refunded about $30,000 USD. He says his biggest fear is being a burden to others. He also worries about medical bills, basic living expenses and the impending loss of freedom.

“Trying to let go of control, stop driving, stop doing basic things… I’ve got to learn how to let go, and prepare for the inevitable.”

A fundraiser has been set up for Anthony Carbajal at www.youcaring.com.

© Shaw Media, 2014

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